Saturday, June 4, 2011

SNSS: Siblings and the LD Person

And now for something completely different... today's SNSS guest post is by a MAN: Peter Flom, a Dad, who is the father of a child with special needs. But even more remarkable is that he is also, himself, a person with special needs, officially on (the fringes of) the autism spectrum with Nonverbal Learning Disorder (NLD).

He writes about this on his blog, I am learning disabled, where he talks about his experiences in life as someone who is different. He also faces special parenting challenges with his two sons, the eldest of whom is also "on the spectrum."

The other different thing about today's guest is that I did not "meet" Peter online, he is actually a friend in real life. I have known Peter since our sons became friends when they were two and a half; his wife is one of my closest friends.

Peter is very lucky in that he had parents who believed in him at a time when "different" children were often discarded. When his mother was told told he would never learn anything or have a normal life, and that she should send him away? She ignored the "experts," instead founding an amazing school for special children to properly educate her son.

And it paid off. Peter is a statistician holding a Ph.D. He is a family man with a wife and two sons, has many friends. "Ineducable?" I think not.

Living with his differences personally gives him a special perspective on the lives of his sons, which he shares with us, with much warmth and humor, here:

The LD that fits me best is probably Nonverbal Learning Disability. But I note that (per the book) people with NLD have no sense of humor. We are ESPECIALLY bad at things like sarcasm which depend on tone of voice. Hehehe.

Yeah, life for us LD people was even worse 40 years ago and more. MBD was my FORMAL diagnosis. Informal diagnosis were things like “lazy,” “crazy” and “stupid” (from adults) or “spazzo,” “retard” and such (from kids).

But some things made it easier. And some NON-things made it easier too. Two of the non-things that made it easier for me were my brother and sister. I got lucky. One of the ways I got lucky is that they think THEY got lucky. Not a lot of people would have thought of having me as a sibling as luck.

My sister (technically, my half-sister, but we have an unhyphenated relationship) was 12 when I was born. She was an enormously competent 12 year old. So much so that our mother trusted her to take care of me.

Once, when I was a baby, she took me to the park and was pushing me in a swing. A woman came up to her and said “WHAT are you DOING with that BABY?!?” and my sister turned to her and said “that baby is my brother, and I am ENTERTAINING him”.

18 months after I was born, my brother came along. I was an odd-looking, skinny, cranky, strange acting child. My brother was a blue-eyed, blond-haired chubby cheeked cutie. So, everyone oohed and aahed even more over the new baby than usual. My sister decided she was having none of that!

No! *I* was the one. Until a couple months later when she told our parents that she couldn’t help liking our brother because “he makes himself so charming.” But, nevertheless, I’ve always been closer to my sister than my brother has.

So, there I am, this messed up little baby with this adorable brother. Recipe for …. A GREAT RELATIONSHIP. It’s weird how these things work out sometimes.

My brother and I shared a room until I was about 15. For most of that time, it was by choice. In the apartment where we spent our tweens and teens, there were two rooms for us. But, until I was 15, we shared one as a bedroom and used the other for other stuff. And, even after I decided I wanted my own room, we did a lot together.

I helped him with his homework (yeah, well, my dysfunctional brain is good at some stuff, like math and writing). He provided relationships. Because I had no friends from 6th to 11th grades. None. I think I had one date (and that was a disaster) and I don’t recall any “play dates”.

But my brother had tons of friends. He loved being around people. And people loved being around him, too. He made himself charming. And I got to share.

Meanwhile, my sister had gone off to college (but she came home some) and then got married. She lived for a little while in Lawrence, Kansas, but for most of the time she lived in Chicago. I used to go visit. A lot. Several times a year. Because it was just a lot easier being in her house than being in my parents’ house. How many people go to Chicago for Christmas vacation?

So, even though for a lot of kids in the autism ballpark, sibling relationships are really hard, for me they were good. Why? Well, Calvin Trillin was once asked the secret to his long, happy marriage. He said “I walked into the right party.”

That’s how I feel. I got lucky. That’s not much help to others, I guess. I don’t know how my brother and sister decided to put up with me. But I’m really glad they did.

These two boys are very different. Darling Older Son (DOS) is asocial, stoic about physical pain but very sensitive to noise, has stable emotional states, thinks and cogitates before asking questions, is often lost in his own thoughts, speaks relatively little (although he speaks well), and operates in a narrow emotional range.

Darling Younger Son (DYS) is social, hysterical about physical pain but not overly sensitive to noise, emotionally labile, speaks in what seems like stream of consciousness, shares his thoughts readily, and is given to hyperbole -- he does not have bad days, he has the WORST DAY in the HISTORY OF THE UNIVERSE; or, sometimes, best day.

Like many sibling pairs, DYS wants to be around DOS much more than vice versa. Unlike many pairs, DOS is just not able to deal with it. But unlike some, where one child is in a different part of the ballpark, it seems like he OUGHT to be able to deal with it.

SOMETIMES he can. For short periods. On his terms.

If he couldn’t cope, ever, at all… well, he would be in a more central part of the ballpark, and farther from us. But it would be easier to understand, in a way, and easier to explain, certainly. When a kid is verbal enough to say “Little brothers are OK. Until they learn to talk” then why can’t he be verbal all the time?

Well, why does a 2 year old want to be alone? Why does a 14 year old say “I really like a lot of space” while an 8 year old says “But I LIKE sleeping on top of you, Daddy!”?

I don’t know. People vary. Including our children. We don’t have acronyms, we have kids.

We can be thankful for some stuff. DOS has never been violent towards DYS. He doesn’t lie about him. He can make his wishes known with language, even if it isn’t always language DYS wants to hear, or can deal with.

Will they get along better later? Probably. I hope so.

Siblinghood is powerful.

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I love how Peter's love for his sons and his endless patience with them shines through here. One of the wonderful things about Peter is his accepting attitude towards his children, as he says above: "We don’t have acronyms, we have kids."

I can also say, with firsthand knowledge, that far from "lacking a sense of humor," Peter is one of the funniest people I know. I love his jokes, like this one, about Aspergers.

Now that you have read Peter here, you're going to want to get to know more about him, so go to his blog, I am learning disabled. He doesn't blog often, but when he does, it is always worth reading.

Besides writing on his own blog, Peter is also a contributor to many other sites including Yahoo's Associated Content, and Daily Kos where he is an active and involved writer and community member.
Finally, you can find and follow him on Twitter, where he maintains two different handles: peterflomLD for his thoughts on special needs and as plain oldpeterflom for his thoughts on all else, including (liberal) politics.

Thank you Peter, for kicking off June, Father's Day month, with your insights as both a father and a sibling. I am happy and proud to call you my friend.

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I am Squashed!

About Me

I am a mother, a wife and a writer. I have a set of 12 year-old twin boys, one of whom is on the Autism Spectrum, while the other has some ADD (as do I). Until recently I was also caring for my elderly, widowed mother, who just passed. Life is exhausting, but interesting. I mostly write about autism, parenting and grief, but I also have a wicked sense of humor, and tell tales from my past.